Imagine you've been diagnosed with an incurable genetic disease and you are told you will not only lose your ability to walk and move your arms, but you will die between now and the next 18 months. What would you do?
My name is Avery Lynn Canahuati, I'm almost 5 months old, and this has become my reality. But before I die, there's a few things I'd like to accomplish...this is my bucket list and my story.
SHARE IT & HELP ME TELL THE WORLD ABOUT SMA!

Saturday, May 5, 2012

Avery Lynn Canahuati 11/11/11-04/30/12 (Today We Celebrate Her Life)

As we celebrate Avery's life on Earth today, please remember she now continues to live through each of us. Continue to share her story, teach others about SMA, and help fund a cure for those currently battling SMA. Avery's life, her bucket list, and her blog will continue through each of you. SHARE THIS WITH THE WORLD!

An anonymous donor will match every dollar donated up to $500,000 to help bring Dr. Kaspar's SMA Gene Therapy program out of the lab and into her SMA friends. Dr. Kaspar's SMA Gene Therapy could cure Avery's friends or at the very least offer advancements towards a cure for them.

Once that goal has been achieved, Avery asks that all future monetary donations be made in her name to Fight SMA (www.fightsma.org).

and remember...

"We are all born pure & innocent. We can let the world change us, or we can change the world."

-My Daddy-

Don't forget to share my story by following & forwarding my blog, following me on Twitter (AveryBucketList) and Like Me on Facebook (Averys Bucket List)! While it may or may not help me in my lifetime, the more people who are aware of SMA, the less likely future children will be born with SMA, and the more likely there will one day be a cure for children who already have SMA!

63 comments:

Avery although we never met, you will always be remembered. I pray for strength for your family, as I know you are dancing with angles. You have left such a large foot print on this world. You continue to amaze me everyday when I see or hear about you all the way in Ohio! I will continue to share your story every chance I get. Oh, and baby Avery, make sure you wrap your arms around your wonderful parents and let them know you are there. Rest in peace beautiful baby Avery!Your friend from Ohio,Jennifer

Thank you for sharing Avery with the world. I will celebrate her life today as well (although from a distance just a little north of you) ... and I will continue to celebrate her life for MANY days/weeks/months/years ahead. We (I) have waited for years for a "star" to step forward and raise public awareness of Spinal Muscular Atrophy ... I just never imagined that we (I) were waiting for her to be born. You didn't have to share your Little Star and her life, but you did ... and continue to do so ... and I will be forever grateful. #1 on my bucket list is now to meet Avery's mom and dad ... and thank them personally for everything they have done and for continuing to fight for Avery's SMA friends.

Much love to you all today ...Brandi, mom to one of Avery's SMA friends

I think about you baby girl often throughout my day. I know you will never forget her but also know that you and your daughter have had an impact on the lives of thousands if not millions of complete strangers. I hold My daughter a littler closer for a little longer each day and try to remember to make memories with her because you have shown me how important our time with our children is. Thank you for sharing your story, you lives, and your beautiful little girl with us.

Oh, Avery, you've had such an enormous impact. There are many tears for you today. May you have peace, love, and a place to run in all of our hearts. Bless this strong family, may they heal and grow even stronger. Much love to all.

Avery is such a beautiful Baby. I celebrate her life every single day. My daughter Emily is 2 years old and I tell her about Avery every day, she even gave her picture a kiss and said Love You :0) She has inspired me to take NO time with my princess for granted. I don't have much but I squeeze as much life out of every minute of every hour of every day. You guys have helped me to realize how precious life is, and it is OUR choice how we it. I'm SO sorry for your loss, but know Avery lives with us always. We'll NEVER forget this beautiful angel ever. RIP Baby Avery. I'll think of you FOREVER.

Laura & Michael,You all have been in my thoughts and prayers and will continue to be through out this journey. May God surround you with an abundance of Peace and Comfort during this tough time. Mark 14:27 Peace I leave with you, My peace I give to you; not as the world gives do I give to you, Let not your heart be troubled, neither let it be afraid. God Bless you all and I will be Wavin' Flag for her and you both today

What a wonderful life to celebrate! We are praying for all of you today. May you feel God's peace, comfort, and love, and may you feel Avery holding your hand and letting you know she loves you and is always with you. We will help to continue this fight for Avery! We love you baby girl!

Greetings from Toronto, Canada. Avery will forever live in our hearts. In her rather brief life on this Earth, she had accomplished what most people could not in their lifetime. May her smile shine upon each one of us from God's Kingdom. I hope my little contribution will help Avery reach the goal of global SMA awareness and finding a cure for it. Warmest regards, Dawn

Thinking of Avery, your family and friends today as you celebrate your precious daughter's life on earth- she is at pure peace now and will surely and undoubtedly be with you always until you meet again...<3

I read about Avery on chron.com. I cried so hard because I knew if I was in the same situation that I would never be strong enough to display the grace and poise you have shown. It struck close to home because the pictures looked like my daughter and she has a dozen or so giraffes like Avery did. I am terribly sorry for your loss. I will continue to spread Avery's story to everyone I know and my god be with you in this time of loss. Your family will always be in my prayers.

we've never met, but my heart is filled with love for you all. you were so brave, Avery, just like your parents. i have been giving my little girl extra kisses all week in your honor. i think i will really always remember your story. none of this was in vain.

Mike, I'm not sure if you remember me from Westbury, but I came across this via fb and was completely taken over with love, joy, sorrow, and a concoction of emotion I can't begin to describe. What a blessing you both were given for this short time. Many people get a lifetime with their children and never understand the precious gift within each one...........I am not only honored to pass this story along but I am forever grateful you set this site up to share. My heart is overflowing with compassion and I have this sweet little girl to thank for this. She is beautiful and will live forever in the hearts of millions. May God bless you and your family.

Mike, I'm not sure if you remember me from Westbury, but I came across this via fb and was completely taken over with love, joy, sorrow, and a concoction of emotion I can't begin to describe. What a blessing you both were given for this short time. Many people get a lifetime with their children and never understand the precious gift within each one...........I am not only honored to pass this story along but I am forever grateful you set this site up to share. My heart is overflowing with compassion and I have this sweet little girl to thank for this. She is beautiful and will live forever in the hearts of millions. May God bless you and your family.

I hope you and your wife can find some type of peace knowing how beautiful your baby was and how she continues to teach and reach people all over. I'm sorry you have to know this feeling of sorrow. You guys will remain in my thoughts and prayers always. I will tell everyone I meet about sma.

Dear Mike & Laura, Thank you for sharing your beautiful daughter with us all. I will remember her the rest of my life. It broke my heart to hear about her passing. My thoughts and prayers are with you & the rest of your family as you celebrate her life. I hope that you continue this page as the years pass. That way, we who have come to love her can continue to help spread the word celebrate her life.

I continue to pray for peace and comfort for your family. We are blessed to know of Avery and her bravery. It is amazing how someone so little continues and will continue to capture hearts all over the world. What a beautiful, sweet and perfect baby girl. Thank you for sharing her story.

Thank you for sharing your beautiful little girl with us and for being so strong for her. Little Miss Avery has done so much (with help from mom and dad) to raise awareness and because of that we will one day have a cure. Thank you Mike and Laura and the rest of your family for being such brave and wonderful parents

I still visit Avery's Bucket List multiple times a day...I'm determined to make her a part of my everyday life. She is my constant reminder to smile often and live always. I promise you, your daughter had taught me so much, I look forward to seeing her picture everyday. In short, Avery humbles me. Thank you for such a gift

Thank you so much Canahuati family for sharing Avery with us and her beautiful smile. I was hooked after reading about her on yahoo and her smiles reminds me so much of my little one. I tell her story to anyone that will find the time to listen. I still get choked up telling it, but i really want to raise awarness for SMA, i know thats what Avery would have wanted. I will always remember that when thing get bad that i can borrow a smile from her. Its amazing how much of an impact your family has made on me, my family and too others around the world. Please continue to write every now and then. Michael, what you have created here, i cant put into words, but the tears on my keyboard says it all. Thanks for showing people how to live, not die.

Thank you so much Canahuati family for sharing Avery with us and her beautiful smile. I was hooked after reading about her on yahoo and her smiles reminds me so much of my little one. I tell her story to anyone that will find the time to listen. I still get choked up telling it, but i really want to raise awarness for SMA, i know thats what Avery would have wanted. I will always remember that when thing get bad that i can borrow a smile from her. Its amazing how much of an impact your family has made on me, my family and to others around the world. Please continue to write every now and then. Michael, what you have created here, i cant put into words, but the tears on my keyboard says it all. Thanks for showing people how to live, not die.

i am amazed when i leave this blog open and watch the number of views on it climb higher, and higher and higher. avery has truly touched a bazillion lives, and is continuing to touch them. thank you avery for teaching us all so much...teaching us all to smile no matter what. in honour of you and your friend estella, me and my friends raised money for you by running a "cookie, lemonade,sunflower stand". all the money is going to kick SMA in the behind. :) i will continue to share your story with the world so that all our future friends won't have to ever meet SMA. thank you so so so so so much again avery. <3

Avery made a positive impact on my life and will not be forgotten. I will continue passing the word about SMA and other diseases taking our angels way too soon. Mike and Laura I have the highest respect for you! It is your turn to mourn.

You and your family are in my constant thoughts and prayers. There is no doubt you felt the beautiful presence of your special girl on this day...and I pray you felt God's loving arms wrapped around you telling you, "Rest now, she is with me, and she is smiling." Peace be with you and your sweet angel.

As others have already said, thank you so much for sharing Avery's story. She, you, has impacted us all in so many ways. Not only are we spreading SMA awareness but we all have a greater sense of appreciation for the gift of life, for our children. You and your family will never be forgotten. Take comfort in knowing that your little angel will always be watching over you. And remember that it's ok for you to have a day, or days, where you can't be strong for her. She will understand and the rest of us will be strong for you. Thoughts and prayers and love and many, many smiles are sent to you today from Roswell, GA.

Oh, sweet little Avery. I wish so much that you hadn't had to leave so soon. I followed your adventures each day and smiled and cried when I looked at your sweet face. I even dreamed that I held you the night after I read about you! I have been wanting to write since I found out the devastating news, but I've been so sad and the words just wouldn't come to me. A few days have gone by and a big box of kleenex is gone, and I feel I need to tell you how special you are. My heart feels like it's been shattered into a trillion pieces and I know that what I feel is nothing compared to what your mommy and daddy are going through. You are one powerful little baby- you have touched my life like no other child has. And I know thousands of others can say the same thing, too. I will try my very best to smile through my No Fun Days and live life to the fullest, just like you did. I have to wait a while to donate to the SMA fund, but I promise you that I will every year, in your honor! You are missed, little one. Thank you, sweet Avery, for changing the world and my life. Love, Lindsay GDenver, CO

Avery.... We are all born for a purpose and with a plan...,you did so much while here for your brief visit and your parents will carry your message forward....as you play among the angels know that we are so very proud of your strength and dedication to get the message out...I hope your parents will write a book of the sayings your Dad told you everyday....I enjoyed reading them in your blog.

Avery has inspired me beyond measure and I celebrate her life right along with you. I have told her story to my friends and my brother who was inspired to have his doctor check the 'SMA' box on their genetic testing last week. Thank you Lord for Avery!

Today I won't cry Avery. I'll smile for you because that is what you did while on earth. I cried yesterday, and the day before, but today I'm going to smile. I wish I could hug you, but you can't hug Angels. Maybe one day I'll get that honor. There are so many people here on earth that love you and love how you introduced us to SMA. I donated in church on your behalf this morning, and I also started an SMA offering that our church will collect every third Sunday and donate it to SMA research.

Dear sweet Avery,I wanted you and your family to know how much you have touched me. You left this world much too soon, but you are not suffering anymore now, and SMA never took your smile away. I wanted to write sooner, but my tears kept getting in the way. I am trying hard to remember your life-affirming lessons. You truly made an impact on me and I will never forget you. I made a donation in your memory to help find a cure, and also signed the petition to make SMA screening standard. I am thinking of your family, and wishing them strength.Love,Tracy G.New York, NY

Life is shortBut mine was shorterAnd I knowIt’s no less harderTo say goodbyeTo your only daughterAfter such a brief timeAnd when youGo into my roomThe hurt willTry to consume youMama it’s okI’ll be by your side

Every day of your life

It’s too late for meI’ve grown my angel’s wingsAnd flown to HeavenTo live with Christ the KingPlease don’t forget meLet my life on Earth have meaningAnd I’ll shine within you, yeahIn everything you do

You madeMe the happiest everThose five monthsWe were togetherI’ll treasure them in my heartFor eternityAnd one dayI’ll see you againWhen you makeThe journey to HeavenAnd we will hold each otherTightly forever

It’s too late for meI’ve grown my angel’s wingsAnd flown to HeavenTo live with Christ the KingPlease don’t forget meLet my life on Earth have meaningAnd I’ll shine within you, yeahIn everything you do

I know it’s tough but just have faithGod will get you throughRemember that I will live onI will shine within you

It’s too late for meI’ve grown my angel’s wingsAnd flown to HeavenTo live with Christ the KingPlease don’t forget meLet my life on Earth have meaningAnd I’ll shine within you, yeahIn everything you do

It’s too late for meI’ve grown my angel’s wingsAnd flown to HeavenTo live with Christ the KingPlease don’t forget meLet my life on Earth have meaningAnd I’ll shine within you, yeahIn everything you doLet my life on Earth have meaningAnd I’ll shine within youYeahI’ll shine within you

Praying for you both as you walk the journey without Avery by your side..... My most fervent prayer is that you feel love, support, and peace through this time. My heart breaks for any unkind words or actions you have felt....... Your little sweet pea was known and followed by so many. AVERY made inroads where none had worked before. Your love for your precious girl is easily seen in your words...

Mrs. Wright's class in California dedicated their tests to Avery last week. Not a single student complained about taking the test; they realized how lucky they are to be here to take the state tests. We are sending lots of thoughts and strength to you. It was a heartbreaking moment to share the loss of Avery with those in class that didn't already know. Several students are planning a fundraiser for SMA. Your mission of educating others is working well. Thank you for your inspiration and reminding all of us to cherish the time we have with family and friends. Avery will be remembered always.

I am praying for you at this difficult time. Thank you for sharing Avery with the world and about SMA. I have never heard of it. As a nurse I do believe I should and I will spread the word as I continue my education. I have a daughter who is almost a year old as I held her the day I read about Avery I could only imagine what you are going through. Gods blessings to you.

I don't have the right words to express the sadness that I feel for your loss. I know that you are with God now and that he has his arms around your Mom and Dad, and you. You left this world way too soon, but you have been able to touch many people in such a short time. You are absolute proof of the goodness in this world. Thank you for allowing me to read about you and know your story. You are a beautiful little angel-God bless you and your family.

I don't have the right words to express the sadness I feel for your loss. I know that God has his arms around you and your Mom and Dad. You are a beautiful little angel who left us way too soon, but you touched so many people in such a short time. You are absolute proof of the goodness in this world. Thank you for giving me the privilege of learning about you and your story-and the beautiful way you told it. You are an inspiration. God Bless you and your family.

A great family that opened the world about SMA..i visit this blog everyday because your life and family inspires me..avery is my inspiration..im kathryn from philippines part of southeast asia..see how your blog touch the whole world??keep the love..

So sorry to hear about your loss, I just now saw the blog...It is very hard to loose a child..I have lost 2 myself at 1 week old and the second child at 2 weeks old...They are all angels looking after us,and they will never have to feel pain or sickness again, we have to remember this, so we can go on..Like they would want us to..Again I am very sorry..

I love baby Avery. She has opened my heart. The absolute love, strength and dignity your parents display is inspiring. I openly wept for days upong hearing that Avery passed away. Avery's family has really taught me to cherish every moment of every day. I WILL NEVER FORGET BABY AVERY.

You have taught me to celebrate each and every life. Thank you for sharing your beautiful little girl with us. I truly believe that when we leave this earth, we are met by our loved ones who have gone before us. Avery is an angel, and she is beloved by those of us on earth as well as those who met her heaven with open arms.I can't even imagine how your hearts must hurt, but I pray that the Lord gives you strength.

I just now opened this blog and read some of the past threads. This blog has been a joy to read, and I am sorry to hear of Avery's passing. I will be sure to spread the word of SMA. Ya'll are an inspiration to so many. Thank you for sharing your lives with us!!

I love Baby Avery. When i first came across this blog it touched my heart. All i could think about was how you guys might be holding up in there knowing that you don't have much time with your little angel.When i saw how she passed away it made tears drop down my cheeks. I am soon to be a mother in just a few weeks. And reading Avery's story showed me that i need to cherish every moment that i will get with my little princess. She might not be with us today, but she is living within each every one of us. Thank you for sharing your story with us. WE really do appreciate it.

Avery is still reaching so many people! About.com stress management guide published this article, and the paragraph about Avery illustrates how even the tiniest of voices can make a very profound impact:http://stress.about.com/b/2012/05/07/three-lives-to-be-remembered.htm?nl=1

Mike & Laura thank so much for sharing Avery & her story with the world. You were all blessed to have each other. What a beautiful little girl she is. the day after she passed my dad showed me a song that reminds me of Avery, Karen Carpenter, sweet sweet smile.

Thank you all for being such an inspiration to myself & MILLIONS of others!